Basically, the child had lymphoma, got his initial chemotherapy, then was supposed to follow up with home chemotherapy and additional follow up appointments, many of which were supposedly missed. Now the tumor has recurred, and is more aggressive, and the child's chance of survival has gone from 90% to 10%.

To complicate the situation, in addition to the child being autistic, the parents are going thru what has been described as a "bitter divorce", where the father hasn't had recent contact with his son, but has now assumed custody.

In ethics, one way of approaching problems where there is conflict is termed the "4 Principles" approach. The authors Beuchamp and Childress wrote a groundbreaking book on medical ethics in 1979, which is now in its fifth edition. In this book, the authors describe four principles that could be used to assist in deciding questions of medical ethics. The four principles are usually listed as "autonomy, beneficence, non-maleficence, and justice". A fairly good concise overview of these principles can be found here.

Although Beuchamp and Childress never argued that any one principle should be more important than any of the others, in American medicine and ethics circles autonomy has generally been held to be "first among equals". What this means is that, generally speaking, a competent adult has the right to refuse any treatment, even if doing so would kill them.

As children generally can't decide for themselves what is best for them (especially 8 year olds), their parents are usually given broad leeway in making decisions for them. Historically speaking, however, there are definite limits to this authority.

For instance, if a child needs a life saving blood transfusion but the parent's religion doesn't allow for any blood products, then it is routine in children's hospitals for emergency custody to be granted to someone appointed by the state, who will approve the transfusion. This case appears to be similar, but not totally identical, to the case of a blood transfusion. In this case, a relatively simple (but still with arguably potential serious side effects) was withheld from the child by the mother (according to the charges). The question is whether the mother should be able to act on her son's behalf and refuse treatment.

Before going further into this, let's go back to the other three principles.

Beneficence means doing the best thing for the patient. It would seem obvious that giving the child the chemotherapy would be the best thing. But each adult has the right to refuse treatment, even chemotherapy. And even with the chemotherapy, there would be a 10% chance of dying. A competent person might say that they would rather have a 10% chance of living, and not have to undergo the pain of needlesticks, the constant nausea, hair loss, weight loss, fatigue, etc. But certainly most people would choose to undergo all of these things in order to improve their chances of survival from 10% to 90%. And most of the time, although chemo is still chemo, outpatient follow up treatments generally have a lot less severe side effects than the initial inpatient treatment.

Although I often think of this Disney character when I hear the word, non-maleficence, what it actually refers to is not harming the patient. The second thing I think of (after the Disney character) is the medical aphorism "First, do no harm." Again, what we balance here is a large potential future harm (recurrence of the tumor, which is what in fact happened) against the immediate harm of undergoing treatment. Perhaps undergoing treatment for this autistic child was particularly difficult. Treatment may have included injections of chemotherapy into the spinal canal, and depending on whether they were willing to anesthetize the child for these, it might have been fairly traumatic (even undergoing anesthesia to have it done might be fairly traumatic). So it's not necessarily a total slam dunk when it comes to considering non-maleficence.

Finally there's justice, which basically means doing what's fair, as well as what's best for society as a whole. Society benefits from having healthy citizens. And most people would agree that all people deserve to get chemotherapy for a tumor. So I think that most would agree that justice would fall on the side of the child getting chemotherapy.

So what we are left with is questions of the mom's ability to speak for the child against the state's interest in having healthy citizens, and beneficence weighing heavily on treating the disease process, as the treatment is mostly safe, though it has some potential bad side effects.

I think that most people would treat their child in a situation such as this, which is why people are up in arms, and why charges have been filed. The mother may have a certain degree of ignorance regarding the risks involved, and may also not have a lot of support in her life at the moment (though I know that's no excuse). The father may or not be a "victim" in all this. He may share some of the blame for not picking up some of the slack, or may have been actively excluded by his wife. It's hard to tell from outside.

In the end it doesn't look forward for the child, but we can all hope for miracles. And I hope that the child's autism did not enter into the mom's equation of whether to withhold treatment or not.

9 comments:

I wish that people would "get" some of the things you outlined in this case... how difficult it might be to administer treatment to an autistic child, risk v. benefit, etc.

When we look at medical history, we know of all kinds of human experiments without consent. How many times has disease been accidentally transferred INTO a patient during a "necessary" treatment, let alone regular bloodwork, etc.? How many times have hospitals known they weren't doing well with handwashing protocols, and yet continued to examine fragile patients?

And who is the state to decide these things? What happened to the Constitution and the fourth amendment when these nosy social workers get involved? Why do doctors get more say-so than parents in court? Just think what that would have been like 100 years ago and how many people would have been leeched, amputated, operated on with rusty equipment. Just think about how these people are not God, and yet they can make these decisions for us?

ANOTHER reason to say NO to socialized medicine. Just think of the things the government can do to those of us objecting to "standard" treatement, "standard" education for our children, etc. etc. Particularly if we're not in favour with the ruling political party at the time.

*shudder*

And yet, this mom might truly have been some horrible nasty person. I would be very hard-pressed to automatically assume the worst, however.

What makes me madder than cases like this? Drunk drivers. At least it could be argued that the state owns the road and "these" are the conditions under which you may drive. Things like seat belt laws, speeding laws.

Hey, how about enforcing some of these SPEEDING laws before coming after moms like this? Do you know how many careless and thoughtless people kill others with speeding? I imagine more than cases like "mom doesn't want this drug for her son, thanks" cases.

Don't get me wrong. My gut still thinks that there's a lot of blame to go around here. And I think that a good deal falls on the mom, for not following thru with the treatment.

But I also think that there's enough blame to go around to others, too. Depending on whether he was actively shut out or just "opted out", there is a lot of blame that should fall on the dad. Just 'cause your getting divorced doesn't mean that you leave your kid high and dry. I know a lot of men do that when they get divorced, but it's not fair to the kids.

Though my wife is a SAHM, we still sometimes barely keep up with all the stuff that the kids need. I could not imagine my wife doing it alone, without any assistance, and holding down a job herself, to boot.

It's easy for society to jump in after the fact and point fingers at her. But perhaps she was overwhelmed and doing the best she could. I don't know. I just think that this is a situation where a little help could have gone a long way.

I generally feel that children need protection from the actions of their parents at times. Including clear cases where medical treatment is indicated, and the children are not old enough to have meaningful input into whether they really want it or not. But I do think that sometimes we just assume that "doctors know best", and that perhaps in cases where it is not so clearcut we should be a bit more circumspect before we jump in and substitute our own judgment.

See, maybe we disagree. I don't think that there ARE clear cases where medical treatment is indicated over the objection of the parent, unless the state can prove murderous intent on the part of that parent. In court. By a jury. Otherwise these doctors and social workers have *far* too much power!

Though... as you have pointed out, this child had two parents and I'm not sure how the rights of the dad to help make decisions was respected. :[

I guess I've had such a long, hard road with the schools and their "experts" knowing what's best for Elf (yay, safe room! we know better than you...) that I am extremely distrustful. When we start handing over medical decisions to doctors, and a cancer treatment stands to net him a lot of money, can we say we're getting an unbiased opinion?

How often have doctors prescribed meds that weren't *necessarily* needful to boost overall sales? To have the doctor be able to be the final arbiter of what is best for the child is... frightening beyond belief to folks like me.

Another point you mentioned that I think bears discussing... the autism as it relates to deciding on a treatment for a child.

I love Woodjie more than you can imagine. I think there's a special sort of love you can have for someone, knowing that person will never, never be able to "pay you back" for what you do. Maybe he'll never even say, "Love you, Momma." You know your giving, your tears and your prayers are truly selfless then, yk?

Anyway. Love that Woodjie Punkin. And yet... IF (God forbid!) both Elf and Woodjie got some sort of cancer that might be fatal without horribly painful procedures... I may just only get the treatment for Elf.

Why? I can tell Elf what is going on. He can dislike something but understand. He will not feel persecuted day after day, week after week and wonder why he is unloved.

Woodjie would. And I have to think what it would do to his little spirit, to his quality of life.

Oh! Such a hard decision that would be if I were faced with it. But there is, yes, that possibility that I would not go through painful treatments for a more "severely" autistic child. Not that that child doesn't deserve to live, or need a chance. Not that I would ever actively harm him... more that I would have to weigh the overall chance of good to what he'd have to go through, and there would be that psychological "not understanding" the torture for weeks or months in Woodjie's case.

Well, hopefully I'm sorta clear. I guess I would like to see autism valued as part of the child, not for euthenasia etc. but for at least understanding why mom didn't want to do that to her baby. :[

So sad.

Then again, God forbid, that doctor might just walk in the room and I may tell him, "Give him every treatment in the book and a few extra just in case! Now!"

I'll never know unless/until I'm faced with it. I would *like* to presume the best of the parent, which might be wrong of me to do. I just can't see any mom wanting to do wrong by her child. Nope.

Do you think that there are *any* instances where a parent's decision should be overridden by doctors/society? Can you agree that if the child has lost more than half their blood volume and needs a transfusion (to both *significantly* raise the odds of surviving, as well as the odds of surviving without brain damage) then if the parents refuse the state should step in and let the doctors proceed?

I agree that there are perhaps a *lot* of times where doctors and social workers get their way because "they know best" (when in fact best may be debateable).

But I do think that there needs to be *some* mechanism in place to protect children at extreme risk.

I'm not going to touch the second part of your reply, other than to say that I firmly believe that disabled individuals deserve every bit as good a treatment plan as non-disabled ones. Too often I see the prejudice go the other way, where those in charge *assume* that the individual involved couldn't possibly have a good quality of life, when in fact most disabled individuals have about the same self-rated quality of life (no better, no worse) than the rest of us.

Joe, I absolutely hear what you're saying here. I would probably do the lifesaving treatment or not based on what I thought my child's chances are vs. what the kid has to go through to get there. It's the "what the kid has to go through to get there" that IMO is harder on someone who doesn't understand what is going on or is severely autistic. There is the added dimension of possibly feeling betrayed and unloved for those months of treatment. I hope you didn't hear a "less than 'normal' person shouldn't have the same options" argument. And believe me, if there is any way to involve my children in their own treatment, I'll sure do it.

I'm thinking back a year and a half or so ago to when Patrick got his appendectomy. I would have probably overridden any decision of his not to get it done, but he was in so much pain right then, and he listened to the doctors and agreed to treatment. The very second he turns 18, I'll have no say-so. That's as it should be. :]

Anyway, I agree something should be there for kids at extreme risk. BUT... my experience with outside agencies has not been good, so perhaps I way go overboard on the parents' rights thing. It is true that not all parents are good, and it is also true that even good parents are not God.

I think that we can both agree that not all parents, not all doctors, and not all government representatives are good.

And I appreciate that when you have been extremely involved with your child over a long period of time, that it's hard to accept some stranger taking away your right to decide what's in your child's best interest. I, too, have reservations regarding turning over health care decisions to policies made by anonymous committees who only have the "health of the community" in mind, and not the "health of my child".

I know that there needs to be some mechanism to handle "outlier" cases, and in these cases I think that it needs to be done thru the legal system, on a case by case basis.

Very thought provoking piece-and comments. Thanks for the in-depth explanation. It has given me much to think about. I know that I would do all that I could with all that I had to help my child. What I find worrisome is the bioethical arguments that might be used.."oh, well he wouldn't understand the treatment".."he wouldn't understand the pain involved" etc. etc. And I ask-how do we really know?...who will ultimately make those decisions-based on what? sorry...I tend to ramble..

Whose who in this family?

Me- Joe, husband of a great wife, and dad to two great kids, who were both adopted at birth.
Liz- My ever understanding wife, who manages to wear many hats (mom, advocate, therapist, teacher) for our kids.
Buddy Boy- Born in 2000. Funny, intelligent, inventive, and autistic. Loves machines.
Sweet Pea- Born in 2002. Typical little sister. Competitive, outgoing, and smart. Loves anything pink.